I need advice

[anetap4545]

Hi all, I'm sorry for another post. I did one a few days ago. I had an mri 2 months ago and had a follow up today. 2 months ago I had 4 lesions today showed 5 new lesions in 2 months. I'm devastated. I did everything right eat well excersise and 5 new ones. Now the medicine. They offered me kesempta or ocrevus. I don't know anything about them . I asked but again he ran out of time . Anyone taken them , any advice ? I'm so scared it's progressing fast I'm only 42 and want to live and be happy. I'm so scared. Pls help x love to you all

[kdali]

I have taken both, and they are similar medications. Do you want to give yourself a shot or have an infusion?

[anetap4545 in reply to kdali]

I don't mind I just want to be healthy but I'm scared of taking medications n and serious side effects, the unknown b

[Frances_B]

Did you contact your local MS organisation in the state where you live? (as I suggested a week ago on your first post). I provided a link which gives you further links to the MS organisations in whatever Australian state you live in and support for you through this difficult time is only a phone call away and your local MS organisation can help you with answers to your questions person-to-person instead of you trying to sort it out from people who are mostly on the other side of the world in a health and "insurance" system which is quite different to Aus. More and better knowledge goes a long way towards dealing with the scared part of it all, and an excellent source of that knowledge is from MS Australia.

Eating well and exercising is good for general health and fitness and improvements in those help anyone, not just people with MS, but but it's not necessarily going to stop you from developing more lesions or suffering further relapses - MS doesn't work like that and if you have developed further lesions in just two months then it's even more important that you start appropriate medication as soon as possible. If the one you decide on doesn't suit you there are others you can go on instead.

It is natural be be scared when given a diagnosis such as MS, but all of the MS meds have plenty of "Patient years" in use now, and there is far more choice than there was just 10 years ago. They are fairly simple equations: "Take meds = known reduced risk of relapses and less likely to get more lesions and more disability" versus "Avoid meds = a lottery ticket with much higher chance of winning a prize you don't want i.e. more relapses and more lesions and more disability".

[starlight5 in reply to Frances_B]

Excellent advice👍

[anetap4545 in reply to starlight5]

I did. Thankyou for that information. I spoke to a ms nurse a. She said you need the meds. I feel like the music is so loud and I can't turn down the volume. I just have no choice but to take the meds im so scared how my body will react. I know I have to start and probably will in a week. Just can't believe 5 be in 2 months. Scared it won't work. Oh gosh I'm sorry I'm just devastated.

[CatsandCars in reply to anetap4545]

I would recommend the Ocrevus. They're both excellent, high efficacy meds and work in a similar way, but for me it's nice to just go in twice a year and get an infusion. I used to be on a weekly injectable and I didn't like being responsible for it. I think Kesimpta is probably a smaller needle, but I didn't look forward to the injections and I resented having to keep track of them. You may be different, and that's okay. Just so you get on something as soon as you can.

[anetap4545 in reply to CatsandCars]

Just waiting on a clear of bloods

[CatsandCars in reply to anetap4545]

That's great! I know it's scary, but you can do this. Once you've taken that first step, you'll probably start to feel more in control. Ocrevus and Kesimpta are great at preventing new lesions, and for most people the side effects aren't bad.

[Greentime in reply to anetap4545]

You are understandably terrified right now which makes for confusion. I agree with Frances _B's equation, which simplifies things. I think you should figure out which scares you more, medication side effects or doing nothing. There is an unknown in this either way. But if you have bad side effects you can stop. If you do nothing then you lose out on the potential to slow down progression.

[Frances_B in reply to anetap4545]

I'm glad you followed up with your state based MS organisation - they all exist to support people with MS and actually do it very well. When you feel able to draw breath have a look at some of the resources and webinars on their websites - they have really good ones.

One issue that can be fairly easily dealt with - you've mentioned elsewhere about "not knowing" what sort of diet to eat. It's also another fairly simple one - there are many special "MS diets" to be found on the internet and they all claim to work wonders and have people who claim that whatever diet they are following has "fixed", "healed" or "overcome" their MS. However proper scientific evidence is actually not there, despite all the claims by promoters of these diets that they are "evidence" based. Some of the organisations behind these diets actually tick quite a few boxes on a checklist for cults in relation to how they keep people involved - i.e. various elements of victim-blaming and emotional blackmail are used to maintain follower numbers.

Here are three excellent webinars to which will alleviate much of your diet worries and set your mind at ease.

msplus.org.au/resources/nut...

youtube.com/watch?v=d2kUg-Y...(Not working as expected?)

youtube.com/watch?v=mN7JJ9C...(Not working as expected?)

You will do best to get your information from the websites run by reputable MS organisations - when you have learnt and understand the basic facts you will be in a far better position to assess whether what you find online is solid and factual information or hyped up rubbish - and there's a lot of the latter around which presents itself on pretty and slick websites which make all sorts of claims that newly diagnosed people can't tell is true or not because they don't know anything much about MS.

Here's another couple of links to reputable websites.

nationalmssociety.org/

mstrust.org.uk/

ms-uk.org/what-is-ms/

Remember that knowledge is empowerment, but the knowledge needs to be sound knowledge, acquired from reputable and reliable sources. As you gain knowledge your scaredness levels will go down and you will adjust.

[jackiesj]

I hope you find the peace in your decidecision..Everyone is different and research is a start. Yes, its all confusing and new info ontop of that. It is so individual. best wishes.

[KGrayiskindaok]

Hi, I started Ocrevus 2 months ago and have had no side effects at all except strangely I’m sleeping better and my mind feels more peaceful. I’m hoping it will work to slow the disease. I’m 56. Best of luck on your decision 😊

[anetap4545 in reply to KGrayiskindaok]

You have many lesions, what were your symptoms.

[KGrayiskindaok in reply to anetap4545]

Everyone is so different. My sister is 54, diagnosed at 32 and has many small lesions. She lost sight in one eye for a few days but it came back, had arm weakness, but it came back, numb legs, but it came back. She looks fine and has had no new problems for years despite having no MS drugs. I have MS too, have only a few lesions. Over the years my right leg started getting weak, I have drop foot now on both legs, right side weakness has now caused scoliosis, I have a lot of pain and have to use a walker. I recently started Ocrevus but have also been on Copacone and Avonex. The disease is so different for everyone, but it is not a death sentence. You learn to live with it. Watch out for inflammatory foods and habits. You will be ok. I’m wishing you the best.😊

[anetap4545 in reply to KGrayiskindaok]

How does your sister go with no meds, does she get more lesions?

[KGrayiskindaok in reply to anetap4545]

Amazingly, she is doing fine with no meds. She tried some early on but had side effects from them she didn’t like. She doesn’t have good insurance so hasn’t had an MRI for quite a while. She’s supposed to get one next month so maybe it will show less new lesion activity- or maybe she’s just one of the lucky ones. Even though you say you have many lesions, it really depends where they are. Maybe you will be one of the lucky ones too😅🤞Think positive and I would still recommend a DMT👍

[anetap4545 in reply to KGrayiskindaok]

Isn't she scared od declining? Getting more lesions or irreversible symptoms?

[KGrayiskindaok in reply to anetap4545]

Honestly, it bothers me that she doesn’t worry about it more, especially since my symptoms are worse than hers and she can clearly see that. Hope for the best, but prepare for the worst I say.

[anetap4545 in reply to KGrayiskindaok]

The worst? How so?

[KGrayiskindaok in reply to anetap4545]

I just mean -get on a disease slowing therapy soon to avoid as much bad symptoms in the future as possible. If I had started Ocrevus sooner I may have less muscle pain, walk easier, and not have scoliosis. I’m glad you are finding out early. I waited too long to try DMTs. We can’t predict the future of what MS will do to us but we can arm ourselves as best we can. We are lucky to live in a time when there are drugs, therapies, and organizations to help us. Most people seem to handle their MS pretty well and live just fine with it. There are good things about it too. Even though my symptoms suck: I have a handicapped sign for great parking spots, when I walk with a cane or walker people are nicer to me and I can reach things on high shelves, I can also get out of overstimulating activities that I don’t want to go to easier lol. I also was able to retire early and still have an income thanks to my disability insurance. Things aren’t perfect, but they could be worse.

[ms23]

I agree with what others have said: you can do this! Making a decision and taking action might give you some sense of control, too. It sounds like you will be starting medication soon. Some tips if you decide on infusions (and hopefully others will chime in as well): my daughter gets her infusions at an oncology center. The nurses are wonderful and there are always doctors present. It is a long day but the nurses go above and beyond to keep one comfortable. There are hot and cold beverages available, as well as healthy snacks. You can also bring your own, and might want to pack a lunch in a cooler bag. If the infusion center does not provide blankets or snacks/drinks, you can bring your own. My daughter dozes off and on but also brings her phone, charger, earbuds, and a book or sketch pad. Restrooms are conveniently located and she has no trouble with the IV pole. The nurses check on her constantly and each time a medication is given or the drip rate is changed, two nurses verify that everything is correct. I hope that gives you an idea of what your day would look like if you decide on an infusion. Whatever you decide, all the best to you. Let us know how it goes!

[PetPerson]

You sound exactly like I did two years ago! I had two mri’s, 6 weeks apart, that showed 7 new lesions in that 6 week time period, I completely understand your panic. I started Ocrevus right away (and was extremely worried about side effects, I have reactions to a lot of medications), but the side effects were almost nothing-I started to get a headache, they gave me ibuprofen and it went away, and the next morning I had a slight rash on my face that went away about 30 minutes after waking up. They now give me ibuprofen and allergy meds right before each dose and I am fine. And all the scary symptoms I had while those lesions were appearing have gone away and I’m back to work. So as terrifying as it is right now, just keep your head up and keep moving forward one day at a time, you’ve got this!

[anetap4545 in reply to PetPerson]

Thank you so much. Have you had an mri since being on ocrevus?

[PetPerson in reply to anetap4545]

I haven’t had another one, but I haven’t had any more symptoms 🤞🏼

[CV97]

I chose Kesimpta over Ocrevus because it is more convenient for me. Infusion centers are 45 minutes away (plus time to park in the garage & get inside the building). Even though it would only be twice a year on Ocrevus, I still dislike giving a whole day (travel time + infusion time) just for a med.

Kesimpta is delivered to my house & a repeating reminder in my phone lets me know when it's time to order & take it. The shot is easy to do with the autoinjector & takes almost no time. The hardest part is remembering to take it out of the fridge so it can warm up a bit before infecting (but my phone reminds me to do that as well.)

Most people experiece the expected side effects when they start Kesimpta. Those should go away after the first few doses. I have been taking Kesimpta for 3 years.

[mrsmike9]

So now you know how fast things can change when you don't take the meds. So flip a coin and pick one. Let your doctor pick what he/she thinks would be best for you. Either way. Pick one and get it going to prevent more lesions.

[robster1]

Hey anetap4545,

I took Ocrevus for 4 1/2 years. The only reason I stopped was due to having ulcerative colitis…this strained my immune system to the point I was advised to stop Ocrevus and start building my immune system back with IvIg. I certainly believe in Ocrevus! I had zero additional lesions and the disease was slowed to a crawl. Of course it’s your decision. I hope this aids you in your decision making process

God bless,

Robbie

[anetap4545 in reply to robster1]

Ocrevus gave you ulcerative colitis?

[robster1]

No, but my neurologist immediately took me off of Ocrevus when I was diagnosed with UC.

[anetap4545]

What do you take now? Were you diagnosed whilst in ocrevus?

[robster1]

I’m not on any drugs for MS. I’ve got Primary Progressive MS. Okrevus is the only drug for PPMS. Fortunately I’m holding on and drug free. Pray for my protection during this challenging time please.

God bless,

Robbie

[anetap4545 in reply to robster1]

Why you not on ant medicine,?

[robster1]

Ocrevus is the only drug for PPMS. My neurologist took me off of it.

Relapsing Remitting-75%of all MS PATIENTS. The drug companies focus on this area because they can sell more drugs.

Secondary Progressive MS-15% of all MS PATIENTS. The drug companies see this as a terrible return on investment because of the low amount of patients.

Primary Progressive MS-10% of all MS PATIENTS. The drug companies see this as a terrible return on investment because of the low amount of patients.

This is why I’m not on another drug.

God bless you,

Robbie

[anetap4545]

Do you worry about getting worse? Why did he take you off it?

[Mollyabigail]

Six Ocrevus infusions in the last three years, & very minor side effects for a few days. You can return to work the next day. But no new lesions on my yearly MRI. I recommend it. Pray about it. God will lead you to the right treatment.

[anetap4545 in reply to Mollyabigail]

Thankyou 💗